Tuesday, August 25, 2015

Ronald McDonald House ~ I had no idea the impact...

Many of the people who follow my blog are parents of special needs children who may one day find themselves guests at a Ronald McDonald House (RMH).  However, I think it's insightful for all of us to better understand what this home provides to some pretty special children.  I will admit - I was familiar with RMH, but never really understood how much a "home" could impact someone facing a difficult medical situation.  All of us who eat at McDonald's have seen the extra change tray that benefits the Ronald McDonald House.  Never before have I realized how much that money could help families who are going through a very tough time. This post is to share a day in the life of care givers and patients at RMH.

After we arrived in Baltimore Monday we got a call from Ronald McDonald House and they had a room for us after being on the wait list for 4 weeks!  Although apprehensive at first since we had a rhythm at the hotel, the move would save a lot of money so it made sense.  There are many things about RMH that make a difference in peoples' lives and I want to try to share that with those who will never need to find a place to call home away from home.

The People - who call this work
From the moment we walked in the door we were greeted by such friendly people.  Their motto is "The House That Love Built" and that truly does describe it.  Both children received a beautiful fleece blanket - Cole's is blue and green and has soccer balls and Reagan's is pink with foxes.  They were so nice to have since we hadn't packed blankets. There is an entire staff of people who make RMH possible.  Interaction with Ashley started when our referral paperwork was sent over from the hospital by the social worker the Friday before Reagan started treatment.  Since there wasn't availability at RMH for us Ashely was instrumental in making sure the hotel we chose from their vendor list was booked at the right RMH rate ($65/night instead of $259).  She was also very helpful in working with the hotel to coordinate a monthly parking rate since it was $32 per day.  That would have been $640 just in parking and we got that reduced to $250.  All the staff was very helpful, always had a smile and really made you feel like they were invested in helping you.  This also included the shuttle bus driver (aka Santa Claus) and the maintenance engineer.  Bud drove the shuttle for 7 years before his wife became ill and passed away.  Now he does odd jobs around the house like hanging flat screens and checking the rooms for problems such as light bulbs and broken towel rods.  He's probably almost 80 years old and his kids are moved away, but he likes knowing he can help these kids in some way.  During the Freddie Gray riots in Baltimore a mom was driving back from the hospital and her car was surrounded by rioters just 2 blocks from RMH.  She called RMH frantic and Bud and Sue called U of Md police and ran down the street to try to help her.  Such amazing people.

The People - who call this home
In addition to the staff at the house, there are dozens of people who called this home.  We met so many amazing kiddos and their parents, aunts and nurses.  We met Lizzy, Gabe, Riley, Maddie, Mia, Maddie (another one).  We met 3 children having leg lengthening, 2 with cancer, 1 with a tumor (a 2 year old waiting to find out if her foot would need to be amputated), 1 with Spinabifida back year after year for therapy, 1 with severe neuro behavioral issues, 3 who had bladder reconstruction and had colostomy bags, and 1 quadriplegic.  We met 1 friend from Japan, 1 from Korea, two from MN, two from TX, 1 from NY, and 1 from Delaware.  Each had a story and each were on a journey with an end that was unknown.  Two of the children who were doing leg lengthening were there for 3 months every time they came.  Both had been coming for 10 years.  There was a short period of time that the doctors thought Reagan had a leg discrepancy so this hit very close to home.  Here is a story about a little boy who needed the surgery - you can see the framing system in the picture and read about it in the Kennedy Krieger magazine.

This "home" that we found was truly that - a place all these kids have come to know well.  And although people come and go, they feel accepted while they are there.  And THAT was what I took away as the biggest benefit of RMH.  Three kiddos pushing themselves around in wheel chairs with huge pins sticking out all throughout their legs.  No one stared.  No one made fun of them.  They could talk about it if they wanted, or we could ignore it and play bingo.  You would often hear the mom's in the kitchen sharing stories and getting advice as they were preparing food or reading a book while their child was at the hospital or in bed in their room.  Sharing stories in a place where jaws don't drop, but understanding prevails. How many times did people at the hotel ask how Reagan broke her arm.  She would say, "I have a cast to make my left hand stronger."  And the poor kid would get these confused looks. She realized they were confused but didn't really know how to explain it any differently without a label.  At RMH, people just say, "Oh, cool" and move on.  It truly was so refreshing feeling like you could share your story with people who could relate and didn't immediately feel sorry for you.

The Volunteers
Another part of RMH that makes it so successful is the volunteers.  We had breakfast and dinner made for us every day.  Different local organizations sign up to cook and donate their time and food to prepare a meal for all the patients at RMH.  Currently there are 33 rooms, but a new home with 50 rooms is being built and will be finished in 2017.  After a long day at work or a full day at home with the kids, what do you do?  These volunteers not only cook, but a different group volunteers after dinner hosts crafts and activities.  One night was painting, one was Bingo, one was making t-shirts.  Honestly this was something Reagan really looked forward to.  It gave the kids something to do and have a little relief from an otherwise
sedentary day.  It was amazing how much less stressful it was trying to figure out where to go to eat, how much it was going to cost, how we would walk there (or find a parking garage), and of course, how can you continue to afford meals out for 5 weeks….let alone 3 months.  I am in awe that there are so many volunteers who give their time to help others in need.  And equally impressed by the donations needed to help support a home like this one.  I often struggle at Christmas to find a way for my children to help needy families where they FEEL the impact of their donation.  We take clothes and toys to the Salvation Army every year and I have them go with me now.  I explain how not everyone can afford Christmas.  While they are still learning this, I am now thinking it may be fun to volunteer for craft night at RMH.  Something where they can see the smiles on the faces of those they are helping….directly.  Kids just like them...

The House that was Home
I've included pictures of the house which was renovated in 2001.  It looked brand new and had everything we needed.  It was cleaner than our hotel!  There was a full kitchen stocked with a free section of refrigerated and cabinet food, a bin in the fridge/freezer and two cabinet drawers labeled with your room number for you to keep food.  It was also fully stocked with plates, pans, glasses, silverware, cutting boards etc.  There was also a playroom, playground, craft area, piano and computer room.  They had tons of crafts, art supplies and games.  And for the older kids, they had gaming systems, computers, ping pong, air hockey and a pool table.  And Reagan's favorite part - a mailbox!  Every day Reagan got to go to her mailbox and see what someone left for her.  There were often snacks, gift bags, or toys.  There was also a filing drawer filled with any toiletries you may need.  Given RMH is not in a nice area of town and many of the guests flew in, it was nice to have all the supplies provided.  Supplies surely donated so there was no charge.  Did I mention the soda machines?  They were stocked with $.25 sodas - that's like 1950's pricing!  This is another idea I have for my kids - to take gift bags to RMH on their birthday to bring a smile to another child's face.  When we checked into our room there was a small stuffed kitty sitting on the table in our room.  These were donated for every child by
Lindsey's parents in memory of a little girl who never went home.  She loved kitties and this is her way of leaving her legacy by bringing a smile to every child who receives one.

As you can tell, I was absolutely captivated by our experience at the Baltimore RMH.  The best way to summarize is that when we were at the hotel it was a jumping off point - a place we would regroup to decide where we were going next.  It was not a place to be.  Moving to RMH allowed us to just BE and to relax. We didn't have to find somewhere to go.  We found our roots at RMH and went to therapy and then came back to find refuge. To find a place to play. To find food.  To find friends.  To find peace.  Almost like a sanctuary from the reality of why we were there.  I realize my children are very blessed to be healthy.  They were not facing the tough journey that many of these children are facing.  And we knew we were going home.  But I've been in these parents' shoes.  Uncertain of what might come next.  Not having answers.  Not sure if my child would live or die.  It takes a lot to run a place like this - money, time and people with the energy to make it happen.  We certainly feel blessed to have been able to stay and while we hope not to return, it's nice to know there are homes like this for the thousands of people who need them every year.

As I prepare the kids for school next week and try to pick out the perfect first day of school outfit and buy their favorite lunch box, I can't stop thinking about all our new friends at RMH who will not be going back to school.  Gabe and Lizzy are not thinking about meeting new friends and learning new things, they are struggling to just avoid infection so they can go home.  We should all keep in mind how blessed we are.  We all have struggles.  We all have challenges.  But we also have blessings…sometimes we just need to be reminded that life is not about stuff.  It's about family.  It's about Hope.  And it's about being present for those who need us most.  And as we each prepare for our tomorrow, I will leave you with a reminder from Day 1: "In my mind, I can do anything."

Sunday, August 23, 2015

Hello Ronald McDonald House and Good-Bye Kennedy Krieger !

Wow, we have been home for three days and I'm just now finding the energy to post an update from last week.  Here's the down and dirty from our last week of therapy.  We saw amazing progress and
their hard work showed!  Reagan spent time most of her time with Nicole (OT), Erin (PT) and Jill (summer intern).  Depending what order Reagan had her therapy and what other appointments they had during the day depended who I would see at the end of the day.

Reagan's week started with pajama day at therapy. The importance was to ensure she is able to get ready in the morning by herself.  So the activities included brushing teeth, brushing hair, putting on clothes and shoes.  It's amazing to see her asking to be more independent.  They also played volleyball, soccer, and came home very tired from all the outdoor play. After dropping Reagan off and finishing up Cole's therapy we got a call and were accepted into the Ronald McDonald House.   After waiting for 4 weeks we were ELATED!

After getting checked in and picking Reagan up we headed back to the Ronald McDonald House (RMH) and spent the afternoon on the playground there.  We had to prepare the kids for the transition - their first question, "do they serve fries there?"  They were very disappointed they didn't.  But we did have a snack in the kitchen.  I was helping Cole with something and when I looked over Reagan was peeling an orange by herself!  It was amazing to see her being able to rotate her left hand and grip the orange strong enough to peel it.  Wow. Just wow.

Late afternoon Reagan lost her second tooth!  Luckily the tooth fairy came prepared - that tooth was loose for two weeks!  RMH was the absolute best blessing and we had no idea.  From the moment we walked in, people were happy and friendly.  I will share more about RMH in my next post.

Tuesday started with Reagan waking up at 4am to see if the tooth fairy was able to find her in Baltimore. Luckily she did!  Reagan was very excited to see a $1 gold coin.

I had to work Tuesday so Megan took the kids on the shuttle.  Reagan took another field trip to Michael's and practiced pushing carts and carrying bags.  Believe it or not, these are hard activities for her so it's great!  After I got back from work we played on the playground at RMH where Reagan and Cole made some new friends.  After dinner there was a volunteer there who setup a Bingo game with prizes for the kids.  All the kids had SO much fun.  It was nice for all of them to avoid reality for an hour.

Wednesday I also had to work so Megan took the kids on the shuttle again.  Cole hasn't stopped talking about it - they LOVE it!  Reagan made a bird house at therapy in addition to paper chains.  After work we decided to take the kids to the National Aquarium. One huge benefit of the RMH is free tickets to the local activities (based on availability).  We had a great time and headed back to RMH for dinner.  The volunteers that night were from Morgan Stanley and had painting activities.  Reagan painted several wooden animals and another bird house!

Thursday - our last day!  We had a busy morning getting the room packed up, getting breakfast and heading over to the hospital.  The last day was focused on completing video evaluations (the after videos so they can compare to the before video) and surveys to compare before and after perception of  abilities.  We were done by 11am and were happy to get in the car and head home…for good.

Although there were times during our 5 week stint that I questioned whether all the effort and pain was worth the benefit, I have no doubt now.  It was a LOT of work to make it happen, but to see Reagan so much more confident and able to try new activities is priceless.  The team at Hopkins (Kennedy Krieger) think this should be her last constraint therapy.  She met most of her goals and we took home a very extensive home program which we will be following on our own.  Research and experience have shown that as kids get older and have more functionality it's more important to completely bimanual activities.  Their recommendation is that she return next summer for either a Boost program (individual bimanual therapy) or a Bimanual Camp if they have enough candidates.  It's overwhelming thinking about next summer already, but we will take it one day at a time and see what next year brings.  The PT also suggested we talk to Reagan's physiatrist about a night splint.  The first week of therapy she said she thought Reagan needed to be back in a leg brace but after seeing her Erin agreed that the brace may slow her down.  A night splint is a good compromise to see if it will help loosen the tightness in her left leg.  The concern is that as she goes through growth spurts it will get worse and cause tripping.  We don't go back to see the physiatrist until December but I will call and see what she thinks.  For now we need to focus on the next month getting back into our routine and getting ready for school to start in a week.

We were lucky enough to have NO therapy Friday for the first time in 5 weeks.  YAHOO!  So we packed up early Friday morning, picked up my nieces and headed to Hershey Park for the day.  Unfortunately I had just picked up my nieces when Cole started complaining of a head ache.  This was the first head ache since being hospitalized and after two blow outs Thursday I was pretty upset.  With the theory that the head aches are from constipation, this put a huge hole in the theory.  Luckily it went away within an hour and we had a great time riding rides.

So it's back to life as usual.  Headed to UVA tomorrow for Reagan's one year evaluation from the constraint program last August, a GI follow up in two weeks, a developmental pediatrician appointment the next week, and a follow up with the low vision specialist the week after that.  We are also starting Cole in a music therapy session which he is very excited about.  Although I have to work this week, we're hoping to have some pool time for our last week of summer!

Friday, August 14, 2015

Kennedy Krieger ~ Week 4, the Cleanse Continues

Off to Baltimore we go. Packing has become much more routine.  The problem with that is I have become more relaxed about reviewing the entire check list.  I've gotten smarter about what to pack and how much, but it's still a lot of work.  Each week I precut watermelon, pre bag the grapes, and pack as much food as will fit in the small fridge in the hotel room.  Luckily we have a free breakfast at the hotel but we try to always eat packed lunch.  Every few days I call the Ronald McDonald House to see if they have space for us, but to no avail.  It would definitely be much nicer to have a little more space and a larger refrigerator.  Not to mention a playroom.  We've gotten our groove, though, and after this week we only have one more!

Monday August 10th
On Monday we dropped Reagan off at therapy at 9am and then headed to Cole's therapy appointment.  He had a great session and I learned about some new tools that may be helpful for him.  The first is a scrunchy like wristband with a dangling dolphin. The concept is that by forcing fingers 4 and 5 to hold the dolphin, fingers 1-3 are more effective at holding the pencil/marker correctly.  VERY cool and works so well!

After lunch I took Cole to the GI, Dr. Louis-Jacques in Shady Grove, MD.  As mentioned in the previous post, he gave us a strict 3 day cleanse followed by a maintenance schedule.  After the GI appointment I picked up Reagan.  She was so excited about her new Spiderman tape for her cast and especially excited about crossing THREE days off on the calendar (Saturday, Sunday and Monday).  They made breadsticks and played some other games that made her EXTREMELY tired Monday afternoon.

Tuesday August 11th
After dropping Reagan off at therapy we headed to Target in Canton to get some "incentives" and then headed back to the hotel to start Cole's cleanse.  We lined up all 8-4 oz cups of Mirilax/Gatorade and got started.  It was a long, exhausting experience, but the goal was achieved.  After picking up Reagan from therapy we decided we needed some additional incentives since the candy and bananas were not working very well.  We took a trip to Toys R Us in Glen Burnie.

Wednesday August 12th

Wednesday started with waking up to Cole being COVERED in poop.  Apparently the cleanse was working.  I have to say I find the terminology quite an oxymoron.  There is NOTHING clean about pooping.  And yes, I get that his colon should be clean, but I can't SEE that.  Wow, I wasn't prepared for that at all….

After giving Cole a bath we dropped Reagan off at therapy we headed to the Neuro Opthalmology appointment at the Wilmer Eye Institute with Dr. Kraus.  As mentioned in that post, it was a good visit and although we were not able to get linked in to any new research, we did make another good connection.  Luckily they took us early because the appointment was rather lengthy and I needed to get back to the hotel to teach a remote session of the Project Management class for DISA.

On the way out of the appointment we walked through the original John's Hopkins Hospital building.  The architecture was absolutely beautiful with hardwood walls and stair rails and marble.  In the main lobby of the building was an extremely large statue of Jesus.  I absolutely LOVE that there hasn't been enough pressure to remove this statue.  There were many notes around the statute and it is apparently a well known location to find the family of patients praying and rubbing his toe.  Needless to say, we stopped and said a prayer and rubbed his toe.  I asked Cole to take a quick picture and I find it very cute that he posed just like Jesus - this was not prompted at all.  Very perceptive young man….

Wednesday was a big day for Reagan.  She had another day of therapy at the pool and then the CAST WAS OFF!  She was so excited to have righty back and was quick to remind me that she no longer needed help eating or brushing her teeth.  It was really nice having that independent girl back!

After finishing Cole's 8-4oz cups of Mirilax/Gatorade we decided to walk down to the Inner Harbor and rent a Dragon paddle boat.  Although rather hot, it was a fun time.  We ended our night at Cheesecake Factory to celebrate the cast coming off and Cole being done with his cleanse.

Thursday August 13th
Thursday Megan took the kids via shuttle to Reagan's appointment and then waited for the shuttle to come back to the hotel with Cole since I was working in Columbia.  Unfortunately he had a pretty rough night sleeping.  The ex-lax and Mirilax cocktails have definitely started to get things moving.  I have never been so embarrassed as having to explain to the front desk that the sheets would all need to be replaced…and quickly. And that was even WITH towels laying under him. Luckily our room has windows that actually open…and that we definitely took advantage of that!  Although he was sleeping through the experience, he absolutely needed to be woken up and bathed at 2:30am.  He slept on and off for the next 4 hours but was very tired.  So Megan shut the curtains and he slept for several hours.

I picked up Reagan from therapy after work and heard all about her busy day!  They played baseball, rode bikes, played volleyball and painted their clay pots from last week.  They also made paper mache rubber gloves.  Reagan was absolutely giggling when I went in to pick her up.  She and Jaryn have truly built a fun friendship and get along very well.  I definitely think it helps to have a "partner in crime".  It's cute to see them pick on each other.

Friday August 14th
Friday was like all others from the past three weeks.  I dropped Reagan off at therapy and then headed
back to the hotel to get the room packed up and get ready to head home.  We decided to take Cole to Port Discovery.  Since I purchased a membership several months ago it's free!  We had a great time, although Cole had a pretty significant blow out while we were there.  I was prepared with extra clothes and a bag, but it was so bad I was not able to salvage his shirt.  And hopefully I didn't traumatize the little camp girls in the bathroom watching poor Cole get stripped down and have a wipe down bath on the changing table.  Desperate times call for desperate measures right?! Wow.

Reagan had another great day at therapy and we got a long list of homework activities.  Because the cast is off, all the focus in therapy is on bimanual (or two handed) activities.  Cutting food is one that is very difficult.  You have to "stay in front of the fence so the dog doesn't bite you" - cute analogy to remind them not to put the knife behind the fork, only in front.  They also have to focus on getting their index finger out to provide the support needed to stabilize the food.  And yes, this is on her homework.  They also made tie died shirts and made s'mores !  They apparently took tin foil and laid the chocolate under plastic to melt it.  Pretty cool!  After therapy we headed for home.  Luckily we made it in under 3 hours which was lucky given the back up on 495 from one lane being shut down on the American Legion Bridge.

I thought it was interesting when we went to bed tonight that Reagan asked me if I have trouble turning my hand over.  I cautiously said no and asked if she noticed that the other kids at therapy have trouble.  She said there is a therapist who does.  She seemed very interested that there was an adult with this challenge.  Although we've done this therapy 3 times before, it has always been private/individual sessions.  This time she is with Jaryn, but there are also 3 or 4 other kids at the facility in the kitchen and hallways and sharing the gym who also have similar challenges.  One little boy has a prosthetic leg.  I think it has been very enlightening for her to see there are other kids like her.  I could tell she was thinking about this and I hope we can work through her feelings as she thinks more about it.

After what feels like a very long week and even longer month, we are all happy to be home.  I didn't waste any time getting unpacked and getting the soiled laundry cleaned.  Luckily I was able to salvage everything that was hit by the cleanse except the one shirt that had to perish at the museum today.  We have a very busy weekend planned to celebrate my parents' 50th wedding anniversary.  My father is one of 8 brothers and sisters and my mother is one of 5 brother and sisters.  Many of my aunts/uncles, cousins and their kids have been able to travel from far away to help us celebrate.  Not sure how we'll squeeze in Reagan's homework, but we'll try!  We're off to Baltimore again Monday for our last week!

Wednesday, August 12, 2015

Update on Cole's progress ~ Appointment with the Neuro Opthalmologist

One of the recommendations the neurosurgeon made after our appointment last week was to make an appointment with an ophthalmologist to confirm there is no pressure on his brain.  One way this can be tested is to look at his optic nerves through an eye exam.  I had already made an appointment with a neuro ophthalmologist at John's Hopkins in the hope of getting connected with recent research being done on optic nerve regenerations.  So we met with Dr. Kraus today and Cole and I absolutely LOVED her.

She had a great bed side manner and worked very well with Cole.  She teased him about looking into his eyes with a special machine to see when he last ate ice cream.  Cole was very excited to see how this would work!

She was very patient with all my questions.

  1. The first was regarding new information that I recently learned about a possible risk of developing glaucoma which could cause blindness.  She said that although this is a possibility, he is not at a higher risk for it.  
  2. My next question was about his increased risk for retinal detachment later in life because he had Retinopathy of Prematurity.  Although she confirmed that he is at a higher risk than other children, she said that they essentially "cemented" the retinas when he had his laser surgery and the hope is that this will be enough to keep them attached.  
  3. I also asked her about whether Cole would be a good candidate for Prisms - a special type of glasses that could help him.  She said that she didn't think they were necessary.  If anything, he may need surgery later to correct his nystagmus.
  4. I also asked her opinion about getting a walking cane and braille.  She said that she doesn't think he needs a cane but we would know better based on how he's navigating his environment.  Unfortunately we had an issue yesterday where he ran toward a yellow race car that was inside the mall that had a railing all the way around it to prevent people from touching it.  He was running so fast he didn't see it and ran right into the bar and fell.  He recovered well, but it is always heartbreaking when I can't get there fast enough to stop him from getting hurt.  Regarding  Braille, she said she agrees that he needs to learn it. Although she feels his vision is relatively stable, she said it would be helpful for him.  Although I was disappointed to hear this, we had a great conversation about how it could be incorporated into school.  So instead of him learning all his lessons in Braille, he would learn Braille almost like learning a second language.  We will need to talk this over with his vision specialist at school and his low vision specialist, but I'm feeling a little better about a possible path.
  5. I also asked her to look at the optic nerves and see if they showed pressure on the brain which may indicate shunt issues. Luckily she said no!
  6. Most importantly I asked about the optic nerve research program. Unfortunately he is not a candidate since it is being done only with adults.  However, she said that there is hope that new information will be available over the next few years that could benefit the pediatric community.
  7. Another conversation we had was regarding his visual acuity.  We noticed that he would say he can't seem something but when pushed for a reward he all of a sudden was able to see it.  This seriously makes me question whether we have an accurate measure of his capabilities.  Although it is frustrating that he would just say he can't see it when he can, I love the idea that he may see more than previously thought based on the Low Vision exam.  The doctor said there is an exam called a Visually Evoked Potential where they place electrodes on his head and measure the brain activity when given visual stimulus.  Although not something I think we need to do now, it's nice to know the test is available if we ever need it.
Overall we had a great appointment and she asked us to follow up in 6 months.  We will need to determine if we decide to follow up but I expect we will probably continue with our current ophthalmologist.  Although very disappointed Cole is not a candidate for any follow along study, I feel a little more at ease with the thought of adding Braille to Cole's tool box, rather than having it become a way of life.  Time will tell whether that is the direction we take and whether that's a good choice.